Any ex-caregiver whose patient had a PEG tube inserted before they passed away? How did the end occur? Was it painful?
My dad has PSP and is in an advanced stage - he had a PEG tube inserted when he aspirated 4 months ago - the neuro stopped his carpidopa-levodopa (sinemet) since he had horrible leg spams - it led to a very bad state where he could not talk, eat, drink, sit up, communicate or even swallow his own saliva
Another neuro saw him again a month ago and said to resume the Sinement, in a different dosage and it's given great improvement - he can eat and drink again, though he has some difficulty and he can communicate a bit
The PEG tube is still there - having seen my dad suffer like that before, I want to remove it - so in case he progresses to the stage again where he cannot eat or drink at all, he shouldn't be force-fed and kept alive in a state where every few days he needs to get deep-throat-suctioned and he suffers distress and pain
My dad's neuro refuses to allow it, though I told him that in my dad's condition, all his vital signs are poor - he cannot read or walk or watch TV or have conversations or enjoy the things he used to love - NIH and FRCS both recommend against it, in case the patient is in advanced stage (I posted it here too) healthunlocked.com/psp/post... - BTW, if a person cannot eat or drink, the PEG doesn't prevent aspiration, neither does it prevent the natural collection of saliva/mucus and that sliding down a patient's throat, causing extreme distress and eventual choking... which is cleared in a very painful way... every few days... for many months or years....
I've read other people mention that their patient did not have a PEG tube - and how at a certain point a patient would indicate that they don't want to be fed anymore and they would pass away peacefully (not starve, since the body reportedly releases endorphins which minimizes the pain) - that or they aspirated or died from pneumonia...
I was wondering about other people's experiences - and I wanted to be prepared (this is extremely difficult) so that my dad's end is as little painful and distressful as possible